In brief
Our goal is to bring about a causal treatment for TAOK1-associated disorder. It is an ambitious goal, but a realistic one — and one that cannot be achieved without money. On this page, you will soon find specific ways to support the foundation. We are currently finalizing the formalities that will allow us to accept donations in a secure and transparent way.
Why are we raising funds?
TAOK1-NDD is a condition so rare that research into it will not happen on its own. With fewer than one hundred patients described in the scientific literature worldwide, no pharmaceutical company will put it at the top of its priority list — unless we, the families and friends of people with TAOK1-NDD, fund the first steps. This is the reality of almost every rare genetic disease: it is family foundations that initiate and fund the early research, which only later attracts scientists, institutions, and larger grants.
The good news is that this path works. Knowledge about TAOK1 is growing at a pace that gives well-founded hope — only six years passed between the first scientific description of the condition (2019) and the largest cohort study (2025), and the field of genetic therapies for rare neurodevelopmental disorders is developing dynamically. Every złoty, euro, or dollar brings closer the moment when this knowledge gives rise to a treatment.
What will the funds be used for?
The funds we raise will work toward one overarching goal — the search for a treatment. In practice, this means funding the successive stages of that journey, including:
- scientific research into the TAOK1 gene and the disease mechanism — because to repair the effects of a variant, you first need to understand exactly what goes wrong and how;
- the patient registry and the natural history study — the foundation without which no future therapy can be designed or reliably evaluated;
- collaboration with research teams around the world — including the costs of joint projects, materials, and research tools;
- the foundation’s development and support for families — so that every family has somewhere to turn after a diagnosis.
We are committed to full transparency: we will publicly report how much we have raised and what it has been spent on.
How will you be able to help?
We are working on launching secure ways to give — one-off and recurring donations. The details, along with transfer information and answers to the most common questions, will appear on this page. More information coming soon.
You can, however, already help today in ways that cost nothing: sign up for our newsletter to find out when donations open; tell your friends about the foundation and share our website; and if you are the parent of a child with TAOK1-NDD — make sure the variant has been submitted to the ClinVar database, and consider taking part in the patient registry when it launches. Awareness and data are just as valuable to us today as money.
This content is for informational purposes only and does not replace medical advice. Last updated: August 2026.